We are honored to announce that Nigerian author and entrepreneur Tonye Faloughi-Ekezie is Brittle Paper’s 2024 Advocate of the Year for her important work in championing representations of neurodivergency in children’s literature. 

Faloughi-Ekezie’s work has received attention since the publication of her first book, Ugo and Sim Sim: What is Down Syndrome?— the first book globally to feature black main characters with Down syndrome. Since then, she’s gone on to publish four more books as part of the series, become a highly sought-after public speaker, create animated music videos, organize workshops, develop podcasts, and launch Simone’s Oasis in 2023, a platform that uses storytelling to advocate and create opportunities for children with disabilities. For Faloughi-Ekezie, all of this work stems from her personal life, especially her role as a mother: “What I do now is directly as a result of being a mother. Everything is driven by that. What I choose to do is usually directly because of the need that one or both of my children have.” 

 

Baby Simone’s heart surgery

 

Faloughi-Ekezie’s children Ugo and Simone are the muses for all of her work. Simone was diagnosed with Down syndrome at four-and-a-half months old, prompting Faloughi-Ekezie to significantly reorient her world and priorities. The first book came about as a result of her son Ugo asking Faloughi-Ekezie questions about his sister. Not finding the resources she desperately needed, Faloughi-Ekezie decided to create her own: 

I struggled to find books that could explain what Down syndrome was within a story that represented us as black, as Nigerian as African. It was important to me that, as he learned about this, he could see it and envision it within our own cultural context.

Faloughi-Ekezie’s projects close the gap in representation of disabled black children, so that her children and others have opportunities to see themselves reflected in books and other media, building their confidence and inner strength into adulthood. She continues to draw inspiration from her children, paying attention to their questions and interactions to develop her ideas for future projects. This personal connection and passion is her greatest strength. 

 

 

Through this work, Faloughi-Ekezie has also rediscovered a love for children’s books as an adult: 

Writing these books has been so cathartic, but also reading other books by other children authors has helped to re-awaken that inner child, full of hope and dreams and life and fun. I will be reading children’s books (especially picture books) to the day I die for that very reason.

Children’s books are, however, largely not prioritized in the Nigerian publishing industry, a trend that has been changing only in the last few years. Initially, however, publishers were not at all interested in Faloughi-Ekezie’s work. Rather than let this thwart her efforts, she stayed on course and sold 5000 books on her own over three years. The high number of sales got the attention of Nigerian publishers and she eventually landed a book deal with Ouida Books. 

 

 

Having worked in TV production prior to the birth of her children allowed Faloughi-Ekezie to think broadly about other kinds of projects in addition to books. Following the success of the Ugo and Sim Sim book series, Faloughi-Ekezie hopes to turn the books into an animated series that can have a wider global reach. She is also working on The Sensory Safe Puberty Project, which uses visual storytelling and technology to help teenage girls with neurodevelopmental challenges understand their bodies and care for themselves. Additionally, she is collaborating with Academy Award nominated film director Misan Harriman, Black SEN Mamas UK, Panda’s Black Down Syndrome Tree, and T21 Alchemy to launch The Black Child Down Syndrome Project on March 21, 2025, World Down Syndrome Day. The project opens with an exhibition in London featuring portraits of nine black children with Down syndrome as well as intimate video interviews with their parents exploring their experiences and the intersection of race and disability. 

All of these projects work towards raising awareness and advocating for children with special needs. Faloughi-Ekezie’s target is ultimately to “mainstream” these stories. The last few years have seen growth in the on-screen representation of people with disabilities with mainstream American shows such as “Love on the Spectrum” and “The Good Doctor.” Faloughi-Ekezie wants the same kind of representation for African neurodivergent people, such that stories like her family’s do not remain in a niche or on the sidelines, but contribute to major mainstream content that is universally available. She hopes Simone’s Oasis can become a production hub for books, podcasts, movies, TV shows, and all other kinds of media that tell stories about neurodivergent characters and employ neurodivergent people to make this content a reality. 

 

Simone and older brother Ugo

 

Author and Ake Festival founder Lola Shoneyin praises Faloughi-Ekezie’s books for taking reading beyond entertainment: “They remind us of the diversity of humankind, and they start important conversations about inclusion and our duty of care to those around us, especially children.” Faloughi-Ekezie is creating space for understanding through literature, and it is important to celebrate that. In the best possible way, she is achieving a core objective of humanistic philosophy: fostering empathy through the understanding that storytelling brings.

Faloughi-Ekezie’s love for her work is ultimately the driving force of her success. She finds so much joy in seeing the impact of her work, such as when a parent sends her a video of their child reading one of her books. It is this personal impact for a better future that continues to guide her:

“At the end of the day, we want to make life better for families like mine, who have neurodiverse and neurodivergent children and make a better path, an easier path, and let families know that there’s no shame. There’s no shame. And that these children, these adults, can live a full, happy life.”

Congratulations, Faloughi-Ekezie! We are so grateful for your work in using storytelling to make the world a better place. 

 

How You Can Support Tonye Faloughi-Ekezie:

  • Buy her books to support inclusive children’s literature.
  • Follow her on social media (IG: @tonye_f) for updates and insights on her work.
  • Share this article and her books with friends, educators, and parents.
  • Recommend her books to schools, libraries, and community reading programs.